Tag Archives: Henry

Forgive an excited mother that awful pun, would you? Henry got his first prosthetic this morning!

Checking things out and getting his balance.

Henry’s wonderful prosthetist, Richard.

For now, Henry’s job is to get used to wearing his prosthetic while he does his usual baby things. He needs to learn to crawl, climb, and pull up with it, and he needs to work on standing on two feet rather than only his right foot. These things will help build muscles on his left side. We’ll go back to see Richard and Henry’s physical therapist, Colleen, in two weeks.

We want to take a moment today to thank those of you who have prayed for us, wished us well, and loved us. We have appreciated each and every kindness, both material and not, and we feel blessed by you. Henry is so lucky to have such wonderful friends and family in his corner.This is by no means the end of his road, or ours, but it’s a milestone for us, and we’re glad to share it with you.

Around four o’clock yesterday afternoon, Henry decided he was done with his cast and slid it right! off! his leg during a diaper change.
Cue lots of panic on my part. Dr. S agreed with Henry when he examined him this morning, though, so now Henry is cast and pin free.

We go back in two weeks so that Dr. S can check the incisions and give us the okay to begin the prosthetic process. In the meantime, we’re looking forward to splashy baths! And maybe a little less to panic about.

Today I am posting about something other than fibular hemimelia. ::gasp!::

There’s a lot of joking around the Internet this time of year about babies/toddlers and Christmas trees. Most of the solutions are fairly bleak. You can protect the tree with baby gates or try to block it with furniture. You can leave the bottom half unadorned, or decorate with baby toys, or do away with the tree in favor of ornament stands placed out of reach. My sister-in-law, a mother of four, puts the entire tree out of reach; fully bedecked, it sits atop a corner table, nestled between two couches.

Short on space, we considered several of these approaches as we worried about how we’d protect Henry, our tree, and our holiday spirits. But we’ve found another way that’s worked for us, as you can see:
It looks as if he’s pulling up on giant presents. Really, though, this is our Christmas Tree Protection Barrier. It’s worked beautifully so far, in that our tree is still standing and its bottom half is not bereft of ornaments, so I thought I would share our strategy with you.

I first got the idea for using wrapped gift boxes from Pinterest, of course. This link is the example I liked best, and it cautions against using this trick if you (like us) have a climber. We also have a chewer–no cardboard box or piece of paper is safe here–so I actually discarded this idea for a while. It turned out to be the best start to a solution I found, though, so I made it work for us. Here’s how.

First, we needed boxes. I went to Home Depot and found their heavy duty moving boxes were quite a bit sturdier than regular cardboard boxes. The large and extra large sizes are tall enough so that Henry can’t get onto them (for H, this means they’re above armpit level), so I went with those. We played with them for a few days to be sure they were up to a holiday season of use. Next, we needed sturdy wrapping paper. After Christmas last year, Michael and I bought a few rolls of super nice paper from The Container Store. The paper is heavy, much thicker than usual gift wrap, and has a sort of glazed or coated feeling about it. To finish up, I needed packing tape to build the boxes. I got the heavy duty kind from Scotch and used that for wrapping, too. And, since both Henry and our cat will be messing with these boxes for a while, they also needed some weight to them. As it so happens, I have a couple shelves of books around. All set.

I built a test box and left it in the living room for a few days before I put up the tree. We had to be sure our plan would work…and it did! Henry managed to gnaw through the paper along the top edges of the box, so I covered that area with a strip of packing tape. I also added a few more books to the box to give it more weight. Once we were satisfied, we went to buy more wrapping paper (metallic thus time, which also works well) and built two more barrier boxes. I put packing tape on all the chewing edges. I also custom built the extra large box so that it wouldn’t jut into the living room quite so much and we could still have some variation in the boxes. Finally, each box has about twenty pounds of books in the bottom.And this is the result! We’re pretty pleased. As a bonus, the boxes helped me keep Henry at bay while I assembled, lit, and decorated the tree.

It’s been a week since we woke up at 3:30AM to a hungry baby we couldn’t feed. It’s been a week since we drove dark streets to the hospital and joked feebly about the light traffic. It’s been a week since we distracted Henry during vitals, kissed his head, kissed his left foot, and gave him to the nurses. It’s been a week now, almost exactly as I write this, since Henry was wheeled from surgery to recovery.

The surgery went well. Dr. S was able to perform the procedure he’d planned. To be honest, most of what Dr. S said after his initial declaration of success is a blur. I remember being thankful Henry was alive and as he should be. I remember the assuring tone of Dr. S’s voice. I remember holding the X-rays of Henry’s leg before and after.

Seeing his little foot, see-thru, in its last moments as his little foot, was hard for us. It was harder, though, to see our baby so pale and groggy once they returned him to us. Harder still to listen to him crying, screaming, to spend hours bouncing and awkwardly cradling him, awake in the hospital room, trying to calm him as he came out of the anesthesia. Even harder to speak to him reassuringly, to hold him still as three nurses tried in vain to replace the IV he bit from his wrist in the wee hours of the morning.

We came home the next afternoon. Since he didn’t have an IV, they weren’t doing anything for him we couldn’t. We thought screaming at home would be screaming at home, at least. As soon as we left the hospital, though, Henry was through with screaming. He fell asleep in his car seat before we left the parking deck. He stayed asleep through two pharmacies and a quick grocery run. He woke when Michael scooped him out of the car seat and into the house. As soon as we were all in bed, though, he fell right back to sleep between us, and we slept for three hours, more continuous sleep than we’d had in days.

Henry spent Friday night and Saturday quite groggy. He seemed both perplexed and vexed by this, our boy who hates to fall asleep. He wanted to play, and did play, with blocks and a laundry basket and a finger puppet book I picked up in the hospital gift shop. But he glazed over quickly. Sometimes he just shut down, like a little baby robot. He didn’t smile much for a couple of days, didn’t laugh. But the willingness to play, the wanting to, helped us know our boy was in there. Still sunny. Still.

Sunday was difficult. Henry was more alert than he had been, but this alertness came with something like agitation, maybe anger or fear. Whatever it was, it made Henry stop nursing. He was upset about it, I was upset about it. I didn’t know how to comfort him otherwise, and he didn’t want to be with me much anyway. Michael took care of us both all day.

I was able to coax Henry back to nursing a bit on Monday, and by Tuesday he was pretty much back to his normal nursing habits. He laughed for the first time on Tuesday morning. By this time, he also wanted to get back to crawling all over the place and pulling up. The problem? The pin in his leg means he’s not allowed to put weight on his cast. This kid is not into limits. We spent the first half of the week trying to keep him off the cast. Now we’re working on teaching him how to pull up with his long leg rather than relying on the shorter one. We aren’t sure how much we’ll really be able to keep him off the cast between now and January 6, when he next sees Dr. S.

We want to thank those of you who have shown us support and generosity over the last week. And longer. We thank you for your prayers, your kind thoughts, your inquiries about Henry, your offers to babysit, the dinners you’ve brought or offered, the texts and cards you’ve sent. This week has been so difficult, so burdensome, but for many reasons it’s also been a blessing to us. You are some of those reasons. Keep reaching out to us, please. Keep Henry in your thoughts and in your hearts. We three still have a long road to travel.

Henry’s been busy today, playing playing playing. Banging on boxes and tins, fitting cylinders into rings, chasing the cat. We have been busy worrying, waiting, and watching. We’ve had a good day together, though. Our boy just babbles and sings along his merry way.

Our hospital check-in time is 5:45AM. If you have a good thought to spare, send it our way. We’ll update here when we can.

I asked Michael to pack Henry’s toys for our quick trip to Middle Georgia. One of the things he threw into the bag was this tin from a “My Baby’s Print” kit. As you might guess, we bought the kit to capture–this is not the right word–Henry’s footprint before his surgery. Once we got it home we discovered we needed something else, so we haven’t yet done the printing–again, not the right word–but Henry has been having a great time playing with the tin. A super time. A LOUD TIME. It’s so wonderful. This funny, music-loving boy of mine has turned something I thought was sad, something I might have used as a simple container for the print, stowed in a closet until Henry asked for it, into a favorite toy. He’s made such joyful noise. That is something to be thankful for.

I think we’ll make the print tomorrow. Definitely this week, anyway. I still haven’t bought the other stuff we need, maybe because I’ve been avoiding it. Avoiding thinking about the surgery, anywa you, and our particular need to make the print in the first place. It’s hard. But Henry makes things easier, gives me perspective, if I let him.
Maybe it’s cliche, or a bit mixed up, but all this reminds me of 1 Corinthians 13. And because I want to read it, because I want to keep remembering it, I’ll paste it here.

1 If I speak in the tongues of mortals and of angels, but do not have love, I am a noisy gong or a clanging cymbal. 2 And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but do not have love, I am nothing. 3 If I give away all my possessions, and if I hand over my body so that I may boast,[a] but do not have love, I gain nothing.

4 Love is patient; love is kind; love is not envious or boastful or arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful; 6 it does not rejoice in wrongdoing, but rejoices in the truth. 7 It bears all things, believes all things, hopes all things, endures all things.

8 Love never ends. But as for prophecies, they will come to an end; as for tongues, they will cease; as for knowledge, it will come to an end. 9 For we know only in part, and we prophesy only in part; 10 but when the complete comes, the partial will come to an end. 11 When I was a child, I spoke like a child, I thought like a child, I reasoned like a child; when I became an adult, I put an end to childish ways. 12 For now we see in a mirror, dimly,[b] but then we will see face to face. Now I know only in part; then I will know fully, even as I have been fully known. 13 And now faith, hope, and love abide, these three; and the greatest of these is love.

As we took Henry’s 10-month pictures a few days ago, I managed to snap this one of a seemingly sinister Jack-in-the-Box looking over Henry’s shoulder. Michael and I laughed and laughed.

Tonight we’ve laughed at form-fitting baby pants (red and white stripes from the girl’s section, but aren’t all babies built the same?) and a gate jumping cat. We’ve made jokes about the NoseFrida and post-pregnancy bodily shenanigans. We’ve laughed at ourselves, and we’ve laughed despite ourselves. I’m thankful for laughter. We need it. And it seems to find us.

For the record, H loves Jack. And “Pop Goes the Weasel” is now a favorite tune.

When Henry is upset, the easiest way to calm him is to take him outside. It was cold this morning, so instead of going out, I showed him the condensation on the screen door.

He loved it. He wiped the entire upper glass clear, then wanted to do the bottom. I snapped this photo accidentally, trying to get a video of him squeaking his fingers back and forth against the glass. eeeEEEeeeEEEeeeEEE.

I can be thankful for that squeaking. For that sense of wonder. For that small thing in the course of a difficult day. And for remembering it as I write here, too. Another small thing for which to give thanks.

I was 23 when I first read Beth Anne Fennelly’s Tender Hooks. I thought it was a beautiful book. I didn’t understand it. Eleven years later, I think I’m beginning to.
Today I’m thankful for breastfeeding. I’m especially thankful, seeing as how we’re sick and the baby is somehow not. (Go outside. Curse. Turn around and spit.) the science astounds me. The politics are my politics. The bond I have with Henry is incredible. And tender.

Thee have been times when breastfeeding was awful, when I hated it, when I wished that boy of mine would just for the love of God take a bottle already, all the rest. Times when the hooks were definitely hooks, and painful. Still, we’ve made it almost ten months. H doesn’t show any signs of weaning. I’m happy with that. I’m glad to know I can nourish and comfort him with all that’s ahead.

I didn’t have many examples of breastfeeding, but I’m also thankful for the women who were there for me to see. To listen to. To read.

On the way into the doctor’s office yesterday, we marked the gorgeous leaves that had fallen in the parking lot–Henry, look at the leaves! They’re so yellow!–and I reached into the diaper bag to make sure our notebook was still there.

We took a list of forty-two questions to our follow-up appointment with Henry’s orthopedist. Dr. S was patient and forthright as we went down the list, concern upon concern broken into categories. Henry wriggled in our laps, not so patient. Maybe a glimpse of our own insides, humming and restless with stress, with worry. Once we let him down, he made a beeline for Dr. S, who let him play with his badges and still, somehow, kept his focus on us, kept saying things like osteotomy and ligate, never missing a beat.

It was comforting, somehow.

Not all of the answers we got will matter to anyone but us, but some we’ll share here. To educate you. Maybe to comfort you. To fill in some of the blanks and we don’t know yets. To keep you posted. To keep a record.

What surgery will Henry be having?

We’ve put this question here again because our answer is now both definite and different. Dr. S will be performing a modified Boyd amputation along with a tibial osteotomy. In more general terms, this means Henry’s leg will be amputated through the ankle, but his heel bone (calcaneus) and heel pad, the usual weight bearing structures of the lower limb, will be preserved. Henry’s heel bone will be fused to his tibia. As we’ve mentioned before, Henry’s tibia is bowed. There wasn’t a fibula there to keep it straight. The osteotomy’s purpose is to straighten the tibia. Both the Boyd procedure and the tibial osteotomy aim to give Henry a longer, straighter left leg. This will help with prosthetic use, among other things. The ultimate goal, of course, is to allow Henry to walk as easily as possible.

The surgery will take place on December 10. We aren’t yet sure what time of day.

What will Henry’s recovery be like?

We have more definite answers here, too, though they can’t possibly encapsulate or prepare us for the experience. We’ll be in the hospital between one and three days, depending on how Henry is doing. A metal rod or pin will stabilize the fused bones in Henry’s leg, and he’ll have a cast to protect his bones and the pin. This will be put on before he leaves surgery. We’re fairly certain he’ll have a long leg cast rather than a spica cast, for which we’re thankful. The current estimation re: how long he’ll be in the cast is 4-6 weeks. We have a follow up appointment for X-rays on January 6, at which point Dr. S will make a choice based on how well Henry is healing.

This is a major surgery. Recovery will be difficult. Our focus will be on keeping Henry as comfortable and happy as we can. That will include cuddles, pain management, babywearing, and keeping to our usual, quiet routines as best we can.

Can we visit Henry? When? Will we see you at Christmas?

Dr. S has said we can resume activities like taking Henry to school and church, seeing our loved ones, and spending time at the park as soon as we think Henry can handle them. We won’t likely travel during the Christmas season, and we probably won’t have house guests either. We will invite visitors when the three of us are ready. That may take a while.

We realize this isn’t the answer some of you will want. We know you love us and want to support us. We know you love Henry, and we know you’d like to see him. You don’t have to be physically present to show us how you feel. We can feel your love and support from wherever you happen to be.

When will Henry get his prosthetic?

This depends entirely on how well and how quickly he heals. We will have a consultation with the prosthetist while Henry is in the hospital, at which point we might have more to tell you. Our best guess is that he’ll be fitted a few weeks after his cast comes off. He’ll receive the prosthetic once it’s been made, likely a few weeks after the fitting.

What can we do? What do you need?

Many of you were kind enough to bring or send us a meal after Henry was born. That was really helpful, so we’ll be setting up another sign-up sheet at TakeThemAMeal.com.

Henry loves to check the mail with his daddy in the evenings. If you’d like to send Henry well-wishes or other baby-safe mail, or if you want to brighten our days with a holiday card, please ask for our address.

Many of our friends and family members have sent us links to articles or blogs about amputation, successful athletes with prostheses, new prosthetic technology, etc. Although we appreciate that so many people are thinking of us, we have done a lot of looking and searching on our own. In addition, many of the complications older amputees face, such as phantom limb pain and blood flow troubles, do not apply here. Mostly, we have plenty to think and learn about with just our Henry and his particularities.

Please do ask any questions you have. We’d rather have you ask than speculate.

If we need anything else, we’ll say so.

Finally, please keep this boy, keep all of us, in your thoughts and prayers.